Tuesday, November 29, 2011

Squeamish? Skip This Post: Just got back from the dermatologist, where my son had an item removed that we have taken to calling the Disgusting Bloody Ear Growth. It started out months and months ago as a fairly colorless lump behind his ear, and got bigger with time, and once it was big enough to feel weird to the touch, he couldn't stop touching it, and that made things worse. In August, his doctor said it didn't have to be removed if he could just stop picking at it, but ... yeah, that wasn't going to happen, was it? It just got bigger and bloodier and crustier and yuckier. He made at least one trip to the school nurse due to bleeding, his pillow was covered with splotches of blood, the bandaids we put over it came away with pads-full of disconcerting colors, and all in all, it started looking like the kind of thing that, if this was a horror movie, would be possessed by the devil. So there was nothing for it but to slice the dang thing off, and I was amazed at how quickly and fusslessly that was done. Our challenges, though, have not been excised: How the heck am I going to keep a skin-picking guy from doing damage to the eraser-size scab that's left behind? I see incessant nagging in my immediate future.

Monday, November 28, 2011

Meaning Well Doesn't Make You Any Less Rude: The blog This Ain't Livin' has a post today about Cure Evangelism, which drives people to grill strangers on their medical care and choices under the guise of being helpful, concerned, and well-meaning. Certainly parents of children with disabilities are well acquainted with cure evangelists, not all of them strangers -- surely I'm not the only one who's had relatives inform me that they know all about my kids' disabilities because they read something in a magazine or their neighbor's friend's hair-dresser did thus and so. And there can be differences of opinion among parents of kids with similar issues that causes evangelism for a particular cure to burst into flames. But random bystanders are also, certainly, full of ideas if your child has a detectable disability, and are happy to expound on them right in front of the kid in question. And truthfully, sometimes, we're all too eager to contribute to the conversation. I know, as often as I wish somebody else would shut up, I wish I could shut my own mouth more.

Friday, November 25, 2011

Unfair Play: The Ams Vans blog had a post today about a President’s Council on Physical Fitness and Sports study showing that "only 29 percent of students with disabilities take physical education classes at least five days a week, compared to 34 percent of students without disabilities." Now, when I was a kid, that statistic would have made me envy students with disabilities, because I hated physical education big time. But my adult self recognizes the injustice of schools limiting physical activity for kids with disabilities because it's too hard to figure out what to do or too inconvenient to train teachers to do adaptive gym (which my son has been fortunate to have thanks to one teacher who covers three schools) or too expensive to make play areas safe for every student. The 5 percent deserve better.

Thursday, November 24, 2011

Happy Thanksgiving!: We just drove over the river and through the woods and down the Interstate to our relatives' house the next state over, and all the way, I was whistling and humming and tapping my toes to this song. Play the video, and it will be your earworm, too. That's my gift to you this Muppet-movie-opening weekend.

Wednesday, November 23, 2011

We Are the 5 Percent!: Education Week had an interesting post up today about statistics from the U.S. Census indicating that about 1 in 20 school children has a disability, or about 5 percent of all students. Not an overwhelming number, maybe, but certainly a presence. Enough to maybe not get treated like someone you're doing a favor to include. Man, in these days when parent participation is so nonexistent in so many schools, if all 5 percent of the special-needs parents in any given school could resolve to show up at PTA meetings and school events, we could take over the joint. Occupy public schools!

Tuesday, November 22, 2011

Last Week, He Wanted to Be a Mechanic: In about an hour, I have a meeting with our high school's transition coordinator and a representative from the county Department of Vocational and Rehabilitation Services to discuss my son's future. I wonder how much they'll laugh when I mention that the field he's excited about this week is forensic science. Yesterday in health class, he saw a video in which a dead person's organs were removed; I suspect it was really about the damage to organs caused by smoking or alcohol, but what he got out of it was how cool it would be to have a job in which you weigh brains. The community college he's planning to go to does indeed have a certificate program for forensics. Wonder how open that field is to individuals with differences? Though I suppose wanting to handle dead bodies for a living is a difference right there.

Monday, November 21, 2011

Bullying Unawareness: There's a thought-provoking post by Robert Rummel-Hudson on the blog Support for Special Needs today, entitled The Things Unseen, about parent perception of bullying vs. socially clueless vulnerable child perception of bullying and how big a stick we should carry when we let those kids know that we know what's going on, mister, and you better cut it out. It's funny -- conventional wisdom on bullies has been that if you ignore them, they will get bored and move on to somebody else. But when we have kids whose first impulse is to ignore bullying, because they don't even notice that bullying's going on, we kind of want to shake them and make them notice. We assume that, far from getting bored, the bully will enjoy our kids' obliviousness, and that will make things worse. Speaking of which, I'm pretty sure that the few times I have inserted myself into a bullying situation, worse is exactly what I've made it. I often wonder how often, as parents, we're just reliving our own personal minidramas instead of actually engaging with our kids' experience. My interpretation of who's a bully and who's not is often very different from my kids', and what if I'm the one seeing it wrong?

Friday, November 18, 2011

Plus, I Rant About the Miserableness of Microsoft Word: Today's topic on The Inclusive Class radio show is one that's often on my mind -- support for struggling readers. Howard Margolis, who does another radio show for Special Needs Talk Radio called "Maximizing Your Child's Potential," talked about the teaching techniques that work best for kids who have trouble with reading, how parents can steer their kids into the right classrooms, and what can be done at home to help your child read better. I love the idea of schools giving parents training on working with their kids -- seems like a much better strategy than just whining that parents don't enforce homework appropriately or get sufficiently involved in school. Speaking of school involvement, though, I think this idea of figuring out what teacher would be best for your child and then sort of structuring the IEP so there's no choice but that classroom shows the value of volunteering in your school so you can spy, get all the good gossip, and know grades ahead of time in whose classroom you want your child to be. (Or not.)

Wednesday, November 16, 2011

As God Is My Witness, I Thought Turkeys Could Fly: Somebody pasted clips from this episode on Google+ this morning, and then I had to go find it somewhere online and watch the whole thing. Love the theme song, love the characters, love the fact that, no matter how bad your Thanksgiving goes, it's never going to be as bad as turkeys falling out of the sky like sacks of wet cement.

Tuesday, November 15, 2011

The Pity Behind the Praise: Sunday Stilwell's post on Adventures in Extreme Parenthood today about the condescending way Ann Curry spoke to a teenager with special needs and her dad on the Today show really resonated with me, as I'm still processing a similar sort of comment made to me in church this past Sunday. It was from an older woman who usually sits in the pew behind us, someone I've often thought must wonder why I don't make my son behave better. So when she made it a point to speak to me after Mass and told me I was a very good mother, I was initially relieved and gladdened, because, well goodness, there are so many not as nice things she could have said. But it's sort of impossible for me to hear praise like that without assuming that the subtext is sympathy and regret for my burden. When I think back to how hard church was with my son in his early years, his current behavior seems unremarkable to me, and so it's a jolt when someone -- with all good intentions, in all Christian charity, entirely undeserving of my ingratitude -- acts like I'm in need of mercy. It's worse when someone does it on national television, of course, but respect and acceptance of the kid would make most parents feel better than being praised for their parenting fortitude.

Monday, November 14, 2011

How You Know It's Time for a Career Change: What, I wonder, goes through the head of a teacher who would duct-tape a six-year-old with special needs to a chair (or, come on, any student at all) and think that was a righteous application of behavioral techniques? I understand teachers being undertrained and undersupported and overtaxed, but duct-taping a kid to a chair in front of a classroom of students? Not restraint or seclusion in the heat of a meltdown -- bad as those are -- but a self-satisfied way of punishing a kid who got up from his seat too often. Who does that? Who goes into teaching with the idea that this would be an okay problem-solving measure? Who doesn't realize that, if duct-taping a six-year-old to a chair is looking like a good idea, maybe a career in teaching isn't really where it's at? Really, lady, there are other jobs. Find one.

Sunday, November 13, 2011

Not Sure If I Should Be Hopeful or Not: Today's my once-a-month day to post on the blog Hopeful Parents, and for once I actually did it early in the day rather than at 11:59 p.m. This month's entry is about the unlikely prospect of my son going to his senior prom, and why I can't run screaming and laughing from that idea as I entirely should, as my husband totally can. Why does prom have such a stupid emotional pull on moms, so that we secretly plot our children's attendance and feel sad if they don't go? Are we just doomed to relive high school ourselves, over and over again?

Friday, November 11, 2011

Is the Principal of Your School Your Pal?: One of the challenges in getting schools to embrace inclusion is finding principals who really believe in it. I'll never forget the way the principal of the school in which my daughter had her first inclusion class did everything she could to sabotage inclusion, thus giving her teachers no particular incentive to try hard to make it work. I think she just genuinely believed it was a bad idea imposed by people without her hands-on experience in schools, but the ones who got punished were not those bureaucrats but vulnerable children who had the least amount of say about their own placement.

I thought about that former principal when talking today on The Inclusive Class radio show with Kathryn Yamamoto, a principal of an elementary school in British Columbia who actively promotes the inclusion of students with special needs in her school, and also the inclusion of parents in the IEP process and the day-to-day implementation of that document. It's great to hear stories like hers, but also sad because that level of involvement just doesn't happen in so many schools. Does your principal get it? Give the show a listen and add this to your wish list.

Thursday, November 10, 2011

Speaking of the Need for Overprotectiveness: Another post that reinforces the need to check and check and check again that your kid is being watched at school -- not to mention the value of befriending bus drivers -- is up on the blog Adventures in Extreme Parenthood. In related news, my post yesterday about the tragic result of a lack of bus oversight brought me the oddest Twitter mention today; it seems that a man who wrote an article for Time magazine about the importance of roughhousing in an era of parent over-involvement tweets something along the lines of "Nice, Terri. You might also enjoy [link to his article]" any time someone uses the phrase "helicopter parent" in a tweet. Similar wording appears over and over again on his timeline, and I have to assume he doesn't actually read the linked material before he responds with "Nice." I hope so, anyway, because responding to a post about child rape with an appeal for more roughhousing and less supervision? Is creepy.

Here's Why I Don't Clean My House: I recently took some time to polish our good-wood dining-room table. Looks great -- except I set the can of polish on the table at some point, and it was apparently wet on the bottom, because when I was done with the elbow grease, there were three new can-shaped rings marring the finish. So I grabbed a bottle of another wood-cleaning solution, and went at the rings with that ... but of course, I put the bottle on the table at some point, and it too was wet, having come from the same spot under the sink as the polish, and so the net effect was the addition of two rectangular marks that also will not come off. So fine a housekeeper am I.

Tuesday, November 08, 2011

I Voted, Really, I Did: I was at my polling place bright and early today, as a matter of fact, but I can't prove it because our town (or at least, the high school where we vote) does not give out stickers or stubs or any bit of swag with which to brag on one's status as an official voter. What gives? I see pictures of people on the Web proudly bearing their proof of good-citizenship, and I feel somehow second-class. I guess when it comes right down to it, I don't really want my sky-high property-tax dollars going to something as trivial as a "I Voted and You Didn't" sticker, but ... maybe a hand stamp of some sort?

Talking the Talk: It's well past Halloween, but here's a scary story for your Tuesday -- a post on the blog Bloom stressing that yes, you really really do need to talk to your child with special needs about sex. If you accept that premise but have no idea how to go about doing it, may I recommend The Rules of Sex: Social and Legal Guidelines for Those Who Have Never Been Told, a very straightforward take on the subject designed for use with children who have developmental disabilities. It's one of those books you'll want to pick and choose from as suits your child's particular needs and your particular comfort level, but it provides a good base from which to start, and some good reasons for doing so.

Monday, November 07, 2011

When Productive Work = Procrastination: Yesterday I had planned to finally finish the book I've been trying to read and review for a month, and so instead I started noodling around on the computer and designed the new Love Notes for Special Parents Calendar 2012. A worthwhile thing to be sure, and something that needed to be done, and yet ... that book is still sitting and staring at me. When did I start procrastinating reading? Reading is what I used to use to procrastinate. Maybe it's the fact that all I ever read anymore is special-needs books to review, and even when I'm really interested in the subject matter, the books tend not to be page-turners. Today's the day. Yep. I'm gonna finish that book today. Sure. It could happen. Hmmm.

Sunday, November 06, 2011

The Underwear, at Least, Is Mine: Managed to switch over my closet to winter wear this weekend (so, people of the Northeast, expect a sudden heat wave). How odd is it, do you suppose, that the majority of the clothing I wear is either a hand-me-up from my daughter or something I retrieved from my mother's closet after she passed away? There's surprisingly little that actually originated with me. Some of it is that I'm short, so I can wear clothes my kid has outgrown; some of it is that I'm cheap. Does anybody else have a multigenerational wardrobe? I've even got a few things from my son's and husband's cast-offs for good measure.

Saturday, November 05, 2011

Looking a Gift Horse in the Mouth: It seems sort of Grinch-like to complain in any way about Toys 'R' Us's annual Toy Guide for Differently-Abled Kids. It's a nice idea, a useful gathering of things, a high-profile enterprise with an appropriate celebrity selected each year to draw warm-hearted attention (this year it's Eva Longoria, who has a sister with Down syndrome). But ... that phrase, "differently abled," just seems so bend-over-backwards to me. Do we really have work that hard to feel good about our kids? There's nothing "different" about my kids' abilities, or their disabilities for that matter -- they have strengths and weaknesses just like anybody else. "Variously abled" might be more apt. "Differently abled," though well-intentioned, is still about different.I agree that "disabled" and "special" and "special needs" and "exceptional" are all problematic in their own ways, but "differently abled" is both not-quite-it and linguistically awkward. What else you got?

Friday, November 04, 2011

Three Letters That Make Our Blood Run Cold: The topic of this morning's The Inclusive Class radio show was IEPs, and automatically when I hear that term I cringe -- from memories of bad meetings, from memories of having to decipher that thing, and from memories of advocates and authors insisting that if you're not obsessing about every word in that document you're letting your child down. But our guest, Jennifer Sommerness, had some interesting things to say about inclusive IEPs that are more action-oriented than your average hunk of legalese, and opening up the IEP process to both parents and regular-education teachers who don't really want to sort through all that terminology either. Unlike most considerations of IEPs, the conversation didn't make me hyperventilate or anything. Give it a listen.

Thursday, November 03, 2011

At What Age Can They Take Over Fighting With Insurance Companies?: The blog Thriving, from Children's Hospital Boston, has a post today about a subject that's much on my mind lately -- preparing your child to take over responsibility for his or her own health care. We're about at the end of the road with my kids' pediatrician, and that's made me wonder whether they should also, say, be making their own appointments, bringing in their own prescriptions, providing their own medical history. I don't think my son is ready for that yet, but I've been breaking my daughter in little bit by little bit, having her make and attend orthodontist appointments on her own or fill out the forms at specialist and lab visits. There's a lot of talk about self-advocacy in a school setting, not so much in a medical one, but it's an important part of becoming an adult. (One thing about the post that did make me feel good, though, was the depiction of a typical teen texting during a doctor's visit while Mom steps up with the answers. I do this, too, and always blamed it on my son's disability. But maybe, in this instance, he's just a teenager. Okay, so he's talking to his imaginary friends during doctor visits instead of to a cell phone, but still.)

Wednesday, November 02, 2011

Stopping the Blame Game: It was nice to see a post titled "The Best Reasons Why Parents Should Be Looked At As Allies & Not Targets Of Blame" on the blog Engaging Parents in School this morning. I get why teachers want to blame parents, and why parents want to blame teachers, and sometimes the blame is deserved. It's never particularly useful, though, and tends to distract from more important things. I've enjoyed being allies with most of my kids' teachers. And I've hated the way parent-bashing has become a regular campaign activity at school-board elections in my town. It's time for some serious re-thinking about how schools and teachers interact with parents, moving from a school-based PTA meeting and teacher conference model to freer interaction on the Web and via e-mail. It could happen.

If There Was a Skeleton There, You'd Never Find It: In a very kind plug on her blog today about the state-by-state special-education resources on my About.com site, Jolene Philo wrote, "Someday, I’d like to look at Terri Mauro’s closets to see if they’re as well-organized as her website!" And I about spit-taked my coffee when I saw it, because ... no. No, you don't want to look at my closets. I don't want to look at my closets, which is part of the problem. (I exclude here the coat closet at the top of the stairs, which was part of the great Living Room Purge of Summer 2011, and is so neat that we could even move the vacuum there from its previous spot in the middle of our bedroom floor. It is an aberration.) My bedroom closet is so messy I can't get at my clothes, which is why many of them are piled on my desk chair. Our linen closet is a jumble of towels and blankets and mismatched sheet sets. The closet outside the kids' bathroom contains not only toiletries but items that couldn't fit in the pantry, which is somewhat unsettling, flour next to toilet paper next to rice cakes next to shampoo next to coffee K-cups behind the Band-Aids. Let's just say that I put all my effort into the work I do for y'all here on the Web, and don't have time for petty things like keeping a neat closet. Yeah, that's it.

Tuesday, November 01, 2011

I Hate Fundraisers: Well, that's not saying much, is it? Most parents feel that way about school money-raising activities. What I'm particularly hating on at the moment is a fundraiser that came home with my son a couple of weeks back with absolutely no information on what it was for, when it was due, who to make checks out to, where to bring it, or really anything other than a glossy two pages on overpriced candles. It came home with another fundraiser that had a smidge more info, but they're apparently unrelated. I think they trust that your child was listening when the stuff was distributed, and ... aw, you know, this isn't even a special-needs thing. I can't imagine any teenage boy sufficiently absorbing candle fundraiser details to remember them when he got home. No one at school seems to be quite sure where and how this money is being raised; I'm trying to pin that down, only because a couple of folks were interested and I'll order for them if I can. I'm beginning to think perhaps I can't. It's an anti-fundraiser, apparently.

Jessica Lange Has a Lot of Company: The FX series American Horror Story is proving to be quite comment-worthy on my About.com site, with some folks objecting to the way a character with Down syndrome is depicted and treated, some folks saying it's just a TV show and we're supposed to object to the way the character's mother treats her, and some folks glad just to have someone with Down syndrome on TV at all. The "lighten up" contingent points out that the use of the word "mongoloid" is supposed to clue us in that Jessica Lange's character is decades out of date in her thinking ... but you know, it wasn't that long ago that I argued with a high-school English teacher about whether it was proper to put that word on a vocabulary list (I lost). Abortion rates of children with Down syndrome -- and horror stories like this one about the abuse of individuals with intellectual disabilities -- leads me to believe that we are not in the kind of accepting society that can brush off aberrant depictions as all in good fun. At any rate, FX just renewed the show for a second season, so those who have hoped to get rid of it will have to rail against it for another year (assuming the character of Addy stays around, in some form or another).

Twitter Updates

About My Family

My husband and I adopted two children from Russia in 1994: a 4.5-year-old girl with language delays and a 21-month-old boy with fetal alcohol effects. They're 26 and 23 now, and we're all surviving nicely.

Expand Your Advocacy

50 Ways to Support Your Child's Special Education looks at all those things you can do outside of those annual IEP meetings to promote success -- from getting a better start in the morning to helping with homework to communicating with the school. Parents have the power to make a difference, and I've got some great ideas on how to do that. Ask for the book at your local bookstore, or buy it online from Amazon or Barnes & Noble.